Is this Lupus, something else or am I just unlucky to have so many things going wrong!

[Ziggyzoom]

Ok, I'll try to be brief, but since having DD2 5+ years ago I have stacked up a load of symptoms that have left me feeling exhausted and fairly miserable TBH. I'm sure they are probably not all symptoms of one thing, but surely some are connected!

Here goes -

DVT immediately after giving birth.
Severe hair loss (leading to baldness, now recovered).
Morton's neuroma in both feet.
Adenomyosis - resulting in ridiculously heavy periods.
Sore flakey skin on one ear, now spreading to bridge of nose.
Blocked tear duct in one eye.
Constant aching and stiff joints.
Recent diagnosis of arthritis in elbow and hip.
Reynauds in fingers.
Random painful areas of skin, feel bruised, painful to touch.
Tingling sensation in bottom lip- comes and goes.
Migraines with only the visual aura symptom.

I was diagnosed with Discoid lupus in 1997, but no recent flare-ups. GP didn't think ear thing was lupus. Stiff joints was put down to mild hyper-mobility aggravated by pregnancy hormones, but surely they have worn off after nearly 6 years! Bloods all seemed to be ok when checked by rheumatologist a couple of years ago.

I know I need to go back to the GP and perhaps show them this list, but I think they'll think I'm a hyperchondriac!

Have you ever looked into Joint Hypermobility Syndrome which is also the same thing as Ehlers Danlos Syndrome Hypermobility type, I think as you have already had it mentioned & it certainly covers a lot of your list, it would be a good starting point.

There is no correlation between how badly you are affected by it & how lax, or how many of your joints are affected, your joints can be mildly affected, but you suffer badly with symptoms such as does my DD & myself & I'm afraid its something you are born with, but depending on how fit you are, it doesn't necessarily show up, well at least not obviously so until something sets it off such as losing fitness or hormones kicking in for whatever reason, puberty, menopause, pregnancy can all have an affect,

so though it does settle after puberty & you might be reasonably fine for years & years, it won't necessarily get better after pregnancy because its not only affected by hormones, but the loss of fitness of the actual pregnancy, labour & lack of physical activity due to looking after a newborn - if that makes sense

The silent migraine can actually be autonomic nervous system dysfunction related, & EDS/ JHMS I was told by the specialist who diagnosed DD is closely linked to Fibromyalgia, basically because its a collagen defect, it can affect anything & I could tick 8 of your symptom,list that I,have problems with & all down to JHMS/EDS

You need to see a good understanding rheumatologist for proper diagnosis, Prof Grahame at UCLH in London is the expert as are others on his team, but there are others around the country too, so depends where you are

Also with the hair loss - did they look thoroughly into hypothyroidism - because that could also answer a lot if not all your symptoms too

HTH

Good Info and more Links in HERE

That's very interesting Rockinhippy I didn't realise there were so many other conditions associated with hypermobility. It is ringing a few bells!